Hello, my dad has recently had a stroke in August. He refused therapy and did not learn to walk, or communicate. He can only say a few words such as "yes" and "no", some cuss words, and greetings. He needs 24/7 care and is bed bound due to not being able to walk. He is clearly not fully there either. He is now home but it is extremely difficult to take care of him and is taking over our lives. He is also very sad and has no motivation. The doctors said it was possible for him to walk again but because of his refusal of therapy he has yet to regain that ability. The rehabilitation was very poor with communication and didn't tell us until about 4 days before that he was refusing therapy, so there was no way of us knowing that he was not receiving help and we could not intervene. He does not want to go back into a facility and has made that clear but it is so difficult to take care of him. What is the best course of action now?
But once he starts and really works at it, it can get better and feels so good as well. He'll notice the difference and feel proud of how far he has come. Maybe he needs some incentive that it will be a fun experience for him.
The one downside is when the session is over and back to the room.
Try to encourage him to give it another try.
So sorry he is going through this.
Regarding your living arrangement, you will need to get help in your home because no one can do 24/7 care alone. Otherwise he needs to go into a nursing home.
I have seen this with both my parents --they didn't have strokes-- but they gave up on physical therapy. They reached a point in their 90s where they didn't want to try anymore. Maybe he just doesn't have it in him to do this.
The bottom line is he needs to want to himself. Maybe telling him that he will need to go to a nursing home would incentivize him to try.
What he wants is irrelevant. Make it fast, stop wasting your time mollycoddling him. He didn’t do the PT, so it’s entirely his fault he’ll spend the rest of his life in a bed.
The sad thing about THAT is that the medical system today doesn't much CARE. If you can't afford fabulous, expensive, individualized care, at a certain age you are just sort of thrown on the trash-heap. No one has the time or the money for you.
My late husband had a massive stroke at the age of 48 which left him unable to walk, talk, use his right arm, and not able to read or write.
With much PT, OT, and speech therapy, he learned how to walk again slowly with a brace on his leg, dress himself with only one arm, say a few short sentences and words, but never could read or write again. But I made sure that I was at his therapy sessions every day to make sure that he was staying motivated to improve enough to be able to come home.
And it was my experience that those folks in therapy that didn't have family members there with them were pretty much ignored and didn't receive the therapy that they should have, and I'm only guessing that perhaps that is what happened with your dad.
He needs to participate in all of his therapies, and even though he's now home, one of you can still bring him to his outpatient PT, OT, and speech therapy, and make sure that he's doing what he's supposed to be doing, as he still has time to improve.
My late husband went to his outpatient therapies for many months after his stroke, and well after he got out of rehab.
And like already mentioned, you may have to tell him that if he doesn't do everything in his power to improve that you will have no choice but to place him in a nursing facility. Hopefully that will be enough to start a fire under his butt to do whatever it takes to improve.
Some points that our family learnt along the way that helped us;
1. Stroke is a brain injury.
2. Words can have power.
After a stroke, the descriptive term 'Stroke Survivor' was more positive. (Avoid the term 'stroke victim').
3. Recovery is a journey.
It is not a journey BACK to how the person was before.. it is a journey FORWARD. From the intial stroke damage.. great improvement quickly for some, smaller/minimal, slower improvements for others. (Initial intense rehab is important, but with effort, gains can be made for 2 years or even more).
4. Recovery is to the NEW NORMAL. This may include loss of walking, hemiplegia, mood/emotion changes. Depression & apathy are common.
5. Stroke is a life-changing event.
Accepting the New Normal & losses takes time. (Specific stroke helplines & councelling may help adjustment).
My best wishes for your family's journey. A trip no-one wanted or chose, but must endure & find their way all the same.
I am also uncertain why the MD is so very convinced that your father CAN get better. It is difficult, without speaking, to even assess his mentation.
I am afraid at last you are down to discussing this with the MD and asking how to proceed. If it is clear that your father is bedbound, then you will have to consider whether the family is physically and mentally capable of assuming care for him. If he is eating well, this could go on for some time, but being bedbound can cause pneumonia, and decubitus bedsores, so it is crucial there be an in home assessment, and some equipment that can get him at least into a chair for the sake of his lungs and his skin.
Your Dad may progress to the stage where the best care is multiple shifts of multiple workers, and the visits of family. I am so very sorry. The fact that there is no improvement over two months time is not a good sign. Most recovery from stroke happens in the first two weeks. The rest of recovery, and especially speech therapy, requires rigorous work over a long time for little improvement at times. I am just so sorry.
Speak with his own personal MD managing his care; this is your best guide. If they feel he can improve then the question is HOW, because you are not trained to accomplish this.
I don't blame him for feeling sad and unmotivated. A stroke of this caliber that's left him unable to walk or talk is life altering and awful, my heart goes out to your whole family. Dementia often goes along with a stroke like this too, so you may be noticing a cognitive decline in him. Hopefully dad is ABLE to do the physical therapy required of him to regain his mobility.
Sending you a hug and a prayer for strength and good luck.